Special Needs and Disney

Not too many things get me really upset or annoyed to the point where I will publically say something but... I am sure that you have all heard about some ruthless people abusing the wonderful accommodation that Disney allows families of special needs children. It is totally despicable to hear that those with means and others with no scruples or regard for families who need extra help have found a way to trudge and barge their way into a situation they do not belong in. They are lazy with no conscious and no concern for anyone else but themselves. For them, money is their power and means more than morals. The example that they set for their children is beyond reproach and how they can look themselves in the mirror or sleep is beyond me!! I hope that one of those families is reading this right now and can email me if they have a problem with what I am saying and my disgust for them. When our kids were young, we took them to Disney World several times. At the time Disney did not offer anything like that -- we did ask. So we stood in line like everyone else and WAITED and WAITED and WAITED the best we could. At times, one of us would

leave the line with one of the kids to give them space move around or let loose some steam. FYI - our oldest was still on oxygen and Will being autistic, could not understand the standing around. I do have to say that the majority of families were very nice and understanding of our situation and would let us come and go as needed. When Disney announced this service for families, I thought it was great. The last time we were there, our kids were older so we took advantage of Fastpass, which was great. Why these families can't use this is beyond me. So there is some planning involved, maybe some inconvenience if you want to get on certain rides before others - get over yourselves. From Disability Scoop, my understanding is that Disney's new rule is a version of Fastpass: Instead of giving visitors with disabilities and their family members a card that allows them to go directly onto rides, the guests will be given a scheduled time period to return to get faster access to the attraction. In essence, guests with disabilities and their families will get to use a new version of the Fastpass tickets offered for certain rides to all guests. It is called the Disabled Assistance System and will start October 9. The change is explained in more depth here Picture from Disney website.

Induced Labor & Autism Linked.

This is from an online newsletter from my chiropractor, Dr. Gibson. Our family has been going to him (starting with his predecessor) for a long time. We started taking the kids when they were small, my in-laws go, my mom went. I saw this article and thought it might be something to share.

Medpage Today on August 12, 2013 published an article from the results of a study from JAMA Pediatrics showing this link. Charles Bankhead of Medway says "The odds of autism increased significantly in children whose mothers gave birth with induced or augmented labor, a study of more than 600,000 births showed." The study was done over an 8 year period and looked at 625,000 babies. They were then matched with their school records and autism diagnosis. Time Magazine's online Family & Health section, August 13, 2013 states "For children who were born after induced labor, the risk of autism was 13% higher compared with that of children born to mothers who were not induced; speeding up labor was associated with a 16% higher risk of autism, while both induction and augmentation were linked to a 23% greater risk of autism in children." In the study results, the authors report "Compared with children born to mothers who received neither labor induction nor augmentation, children born to mothers who were induced and augmented, induced only, or augmented only experienced increased odds of autism after controlling for potential confounders related to socioeconomic status, maternal health, pregnancy-related events and conditions, and birth year." They concluded, "Our work suggests that induction/augmentation during childbirth is associated with increased odds of autism diagnosis in childhood." This is something you may want to check for yourself. Medpage Today Time Magazine online Easton Chiropratic Picture from Easton Pond Chiropractic site.

Ming Tsai - A Great & Gracious Man

After writing the story about Milo and Michael, it reminded me of the time I decided to try to have Will meet Ming Tsai. Will loves watching cooking shows - 'Lidia's Italian Kitchen', 'Nick Stellino', 'Simply Ming'. Will was watching one show and getting the biggest charge out of Ming and his mom, who sometimes appears on the show. So since they are somewhat close, I decided to try and see about going up there. His restaurant is 'The Blue Ginger'. I emailed the restaurant and was surprised to hear back within 48 hours from his assistant. She said it would be great to have Will come up. So we started going back and forth a few times and finally came up with a date. You would have thought Will was the celebrity that night. When we got there, they called him by name and took us to our table. A couple of the hostesses came over and talked to us for awhile. Ming was there but was busy with other people but after about 10 minutes, came over to us. At first Will didn't seem to care or didn't recognize him, we're not sure. Ming saw one of his cookbooks nearby, got it and put it up near his own face -- Will's eyes lit up and a big smile!!! We talked more and I told Ming Will likes to collect cookbooks so Ming autographed that one and gave it to him.

We ate (great food by the way) and more people stopped at our table, including Ming's assistant. When it came time to get ready to leave, Will needed to use the restroom. He sometimes needs help with his personal hygiene, so I asked for a one room bathroom. The main hostess walked Will arm-in-arm, went by the kitchen so he could see inside (the personnel wear baseball caps with the restaurant's name on it and she gave him one), and we went to take care of business.

When done, we wandered to the front. I wanted to say 'bye' and 'thank you' to Ming but saw he was busy; so I told the hostess to relay my message to him. While getting ready to go, Ming came up to us and asked if we brought a camera (which I did but thought he was too busy). I said so to him and he said 'never too busy' and let me take a picture. If you are ever in the area of 'The Blue Ginger', please stop by for a great meal and maybe even to spend time with a great guy.

An Act of Kindness.

According to disability scoop, when Riley, 8, was out with his family eating and was getting a little rowdy, mom knew people were getting a little annoyed. Apparently Riley, who is non-verbal, has been acting up on public outings lately. It so happened that the waitress then came over to tell the family that another family had paid their dinner bill and left them at note: “God only gives special children to special people,” read the message. As mom put it, “To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes. Little did he know what struggles we had been facing lately and this was surely needed at that moment.”

Hit the Water with Surfers Healing

I was reading the Sunday paper and found a small write-up on an event at one of our beaches -- a surfing camp held by Surfers Healing.

(picture from Surfers Healing Wikipedia of founder Israel 'Izzy' Paskowitz) According to Wikipedia, Surfers Healing was founded by Israel & Danielle Paskowitz for their son Isiah, who was diagnosed with autism at age 3. Israel was a competitive surfer and owns Paskowitz Surf Camp. The post says the ocean was the one place that Izzy seemed to find respite. The organization teaches autistic children to surf.

(picture from Surfers Healing site in Wikipedia - surfing in RI) "Surfers Healing seeks to enrich the lives of people living with Autism by exposing them to the unique experience of surfing." The camps are FREE to autistic children and have been held in the following states: Hawaii, North Carolina, New Jersey, New York, Rhode Island; also in Puerto Rico. In August 2012, they expanded to Toronto Canada organized by Aloha Toronto, which is an annual weekend beach festival inspired by Surfers Healing. 2014 will find Surfers Healing taking their camps to Nova Scotia & British Colombia.

Transitioning: Visiting Adult Service Providers.

The past few weeks, I have been calling local adult service providers to see which ones may be taking new clients in the next few months. As it stands, our state government is revamping the work system with these agencies. Some are allowing people to visit and others are not. So Will & I started our visits and saw 4 places. One agency let us come in to talk and get a tour but thought they were not taking names for a few months (Will does not leave school till December anyway). The other 3 were open to new clients. Note -- when you start this process, take your son or daughter with you. It is good to see their reactions, watch them to see if they are interested in anything, if they take note of any activity they see. Let the staff & current clients there interact with them. Ask your questions (see previous post regarding questions for service providers). Your questions should be answered and nothing should be rushed. You should even have time to sit and talk to the person in charge of intake. If the person is real good, they will even provide you with information you have not even thought of yet. They may know about other programs in other agencies and how they are the same or different - if not ask!! Make sure people ask about your young adult and what he or she has strengths in or weaknesses, what do YOU want your child to get out of the program. Ask if he or she can spend a trial day there. If at all possible, have your letter from the state which shows the level of service components that your son or daughter will be getting - based on the SIS eval that was done. Back to the visits -- we had 3 great ones, learning lots about each from some very nice people. Though Will was more interested in getting home, I did find him peeking at a few things in each place - wandering away to look. Anyway, when we got home, I typed out the 3 places we saw on his iPad. Our visits took place on different days, so when I read the names to him I mentioned something different about each place (NOTHING to do with activities or person we spoke to). One - the place we went to with your brother; two - the place that had 2 buildings; three - the place we went to today. I asked him if he liked any of these places -- yes. Point to one you like - he did; do you like another - yes. Point - he pointed to a second one. Then I did it again the next day, writing the names in different order. Same result. In actuality, these were the places I liked as well and thought would be a good fit. I had not mentioned anything to Will about these either. I also spoke with his teacher to see if she had any thoughts on these and she was in agreement with me about why I chose the 2 I did. Why? I liked the social activities at one because they had similar ones to school and a wonderful 'chill out' room when people get overwhelmed or frustrated (I want a room like this in my house). The other agency had a work program also similar to school that will be expanded on into the community - so I thought it would be a good transition for him. His teacher is the one who told me you can split services between 2 places!! So now we TRY to get into one for social activities and one for work. BUT ARE WE DONE?? NO!! GUESS - MORE PAPERWORK!!! So now the next phase... I will keep you posted.

Walk in My Shoes

I received a notification from the Google+ community of 'Special Needs Clothing' (which shows some nice things) showing a pair of shorts with an elastic band top. Of course, Will has been wearing this type of shorts and pants FOREVER since it is the easiest thing for him to put on and get off (his finger dexterity is not good for buttons and zippers). In fact, this type of pant almost caused a fury in his old junior high school years ago -- apparently there were incidents of kids being 'pants'. So the school was outlawing elasticized pants and shorts. My letter to the principal wanted to notify him that for Will, or anyone in our group who can't handle anything else but this type of clothing, it would be more of an incident to have an aide spotted in the bathroom with hands on the child's zipper; though knowing the staff, it would be innocent as they would be helping the child with their clothing using the toilet. BUT how would it look??!! Anyway our group was left out of this ruling. OPPS!! Sorry for wandering off my initial conversation!! The best shoes that Will has worn have been a couple of styles

that I have purchased at Walmart (I am not advertising the store, just stating where I was able to purchase them). They carry 2 very similar styles -- one by Dr. Scholl's and

one by Starter. The Starter brand is lightweight, more of a canvas material while the Dr. Scholl's is leather. They both are velcro closures. The soles are about the same width. Under normal wear and tear, for Will, the Dr. Scholl's wears better -- it is a little better fit for him and so holds his foot better; the Starter will tend to soften and open up/loosen on his feet. There is not much of a price difference. Here are the shoes that Will normally wears (he is such a fashionista!! Sometimes he gets crazy and wears gray!!):

I feel shoes that just slip on for Will are not the best, since he tends to shuffle when he walks and I am afraid he will step out of the shoes. For those who might want more of a fashion statement, I had come across some very neat shoe laces for people with disabilities, including older folks who may have problems with arthritis.

These are called 'Lock Laces'. They are elastic, bungee laces, no tie. Previous post called 'Helpful Shoe Laces' gave reasons why it might be a help for those with medical issues.

A Miss Amazing Pageant Where Everyone is a Winner.

I was watching the Today Show, when I thought I might head out the door to run an errand. I left the TV on while I got my keys and wallet -- so glad I did!!. I was able to watch a video and listen to this story (through a few tears I must admit). Jordan Somer, a young lady from Nebraska, started this pageant when she was 13 years old for young ladies in the area who have disabilities. "It isn’t about who has the best voice or the prettiest dress.

It is, however, still about the tiara. Every girl at the Miss Amazing pageant receives a crown because every girl to an extent in her own way is Miss Amazing, just by participating in the event and really pushing her limits,” said Jordan Somer, the founder of the Miss Amazing pageant, which is just for girls with physical and mental disabilities. The future Miss Amazing's have a variety of physical &/or mental disability issues - some severe, some non-verbal, some high-functioning. The contestants have an introduction ceremony, participate in evening wear, & a talent show. All designed to build confidence & self-esteem. One participant's mother said “To see how much happiness it brings her, to see her meeting all these new friends, just to see that smile on her face, it just melts my heart.” Another comment from contestant Abby Wiegand, “I like it because it puts myself out there and I'm not just this girl in the wheelchair. I'm me.” It is Jordan's hope that all these young ladies will go back to their everyday life with the memory of being totally accepted. The pageant has been going on for 7 years and according to the article, there are many others across the country. To read the article and watch the video, click here.

A Story You Won't Forget.

(picture from LifeNews website) Going through my Google+ community, I came across this incredible story. I believe that all parents tell their children 'it is what is inside a person that matters, looks aren't everything'. At least I hope all parents do... Being parents of special needs children, we do find ourselves explaining looks, sounds, mannerisms, the way our children speak, etc., to other people. I also have found, most people are fine with it, sometimes even explaining that a member of their own family has a certain diagnosis so they are use to the aforementioned. Those who are not fine with it...say a prayer. The story is one that illustrates the hope we all have about seeing beyond the outside. This is a dedicated family taking on a child in need, saving him from a miserable life - saving him from death from his own society. Meet Adam and his family, the Paulrajs.